By Ed Coghlan
For people who are fighting Complex Pain Regional Syndrome (CRPS), this past weekend in Chicago may have been an important time.
Physicians and patient advocates gathered for the weekend to discuss their experiences in the use of Ketamine to treat CRPS which occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale
One of the goals of the meeting is to identify a way to treat CRPS that is acceptable to a broad number of physicians who can then gather data. It sounds like they had a good start toward developing something .
“The consensus protocol, which I am tentatively calling the Ketamine Infusion Reference Protocol (KIRP) needs editing and further refinement before we develop a prospective, multi-center, observational cohort study of the safety and efficacy of KIRP,” Dr. Peter Moskovitz told the National Pain Report.
Dr. Moskovitz is Clinical Professor of Orthopaedic Surgery and Neurological Surgery at George Washington University and serves as Chairman of the Board of Directors RSDSA (Reflex Sympathetic Dystrophy Syndrome Association).
RSDSA Executive Vice President Jim Broatch was also thrilled at how much was accomplished this past weekend.
“This was a very important meeting of clinicians and researchers to begin the work of crafting a reference protocol for the use of IV ketamine to treat refractory CRPS. Although ketamine has been in use as an anesthetic to treat pain since the 1960s, too often insurers deem it as ‘experimental’ and refuse to pay for it,” Broatch said. “It was a powerful, hope-filled meeting.”
For patient advocates like Gracie Bagosy-Young who is a CRPS survivor, the weekend was inspirational. Bagosy-Young gave a talk to patients on Sunday that gave a simple message: “you can do nothing, or you can do something.”
It resonated with CRPS survivors who attended.
“This is why I do what I do,” she explained. “I don’t want anyone to feel that same desperation that I did. If I can alter one person’s loneliness each day, then that day was worthwhile.”
The use of Ketamine, which is a generic, has been around for a while. But since it is generic, no drug company will sponsor the research, which is very expensive. The RSDSA will most likely explore some government grants- like with the National Institutes of Health—or private foundation funding to expand the research.
For now, it appears the strategy is to develop the consensus protocol and have doctors use it and collect data.
For CRPS patients, it’s a great start.